Autism only applies to children

"It's Asperger's and Autism Awareness month! In honor of all children who struggle every day!!"

Every now and again I see similar things appear on my Facebook newsfeed from well-intentioned people trying to 'raise awareness' of the suffering that autistic children face. Inevitably with World Autism Awareness Week (27th March - 2nd April 2017) coming up, I expect to see more of those kinds of social media posts. 

There's a few things that irritate:

Firstly they claim to raise awareness and provide no education, no quick facts or anything that we can learn. If you want to raise awareness, actually provide some meaningful and useful content might be a starting point, yes?! When is Asperger's and Autism Awareness month anyway?!

This notion of universal daily struggling or suffering kinda grates on me. Actually some days as an autistic person I couldn't actually say I struggle. I've had issues all my life but I am not sure if it's just manageable (ish!) because this is all I have known or if in the grand scheme of things, I am generally okay? I avoid stuff that upsets me and that's my coping mechanism. I know certain social activities and career paths would upset me so I don't do it. Simple, right?!

Okay, I get sensory overload and yes it's unpleasant but it's not constantly upsetting me. I am one of the fortunate ones who can generally extract myself from situations before they get to the point of a meltdown. I realise too that not all autistic people can do that and perhaps I am on the end of the scale where I have fewer undesirable autism related aspects about myself than many others.

Autism doesn't impact on my mobility either so I think myself lucky that I can do lots of things for myself. 

When I think of suffering, I think of someone with chronic pain and challenges that impact their lives so greatly that a large chunk of it is utterly miserable. Maybe I am an ablest amongst the autistic demographic but I have never put myself in a category of where I feel I suffer daily. I won't apologise for that either. My lens is how I view the world and I can't pretend to fully know or understand everyone's view but I can try (despite supposedly autistic people being void of empathy - yeah, right!). Sure, life can be struggle at times but autistic people don't have a monopoly on that. 

The whole "in honour of" thing...

Are autistic people in need of celebrating or having our challenges, differences and similarities respected via a little Facebook post? We didn't pick to be like this. We didn't earn this cognitive style. It makes as much sense to me as celebrating people with blue eyes. 

WELL DONE all you lot with the eyes the colour of the sky. You worked so hard just being yourself. 

This is how we are and I think most of us, like the rest of the planet, generally get on with it the best we can?! 

It's all a bit patronising for me.

Finally.... 

There is some notion that within these copy and paste crap that autistic adults are off the radar. 

Do only autistic children count? Now you're 18, the Facebook concerned no longer bother about us. Or maybe they think we have a terminal disease called autism whereby we don't actually reach adulthood. Incidentally, I am exceeding all lifespan predictions being in my 30s... Or perhaps one of my autism super powers is cheating death by using complex mathematics?!

Hmmmm or maybe by the time one leaves childhood, we have magically grown out of our cognitive style and become fully signed up members of the "Normal Club"?! Here we have lost our sense of systemising, become extremely empathic and gained wonderful social skills to become an artful host within high society. 

Or more likely, we just get on with it. We perfect our coping mechanisms in time, we learn how to pretend we're okay, understand more about ourselves to avoid things in life that upset us and perhaps care a little less about what others think. It's not that we have cognitively changed in our essence but many intellectually higher functioning autistic people probably have adapted from where they were in early childhood.

So when I see such Facebook posts, don't be surprised if I remind the person about the existence of autistic adults. It's not to be pedantic (ok, yes a touch!) but because it's attitudes like that which reinforce the view that only those in education and young people are entitled to autism related support. This is because I often feel like the existence of autistic adults is denied unless they have comorbidities and require social care and institutionalisation. Us autistics who seem okay on the surface are often forgotten. Time and time again, I think back to my experiences of working in education and my life and seeing support in schools and colleges but it almost disappears overnight once one has left their educational institution.

So please, let's not make sweeping statements that do nothing to help anyone, spread generalisations and misinformation but also ignore a sizeable demographic with autism. I'm not sure we need your kind of sympathy...

Now, if you like, you can return to your fake news, click bait websites and videos of extremely daft people doing very daft things! 

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Does autism even exist!?

Here's an extremely contentious view to start off with but I am wondering if autism does exist, after some of the reading I have been doing for a PGCert in Autism and Asperger Syndrome with Sheffield Hallam University and the National Autistic Society.

Let me clarify because it is a position that could offend.
I am not suggesting that the symptoms, behaviours or difficulties do not exist and I am not denying my own sensory overload issues! These challenges are well documented and no one should be denying sensory overload, having problems with executive functioning such as planning and organising or having a mindset that is geared to not "seeing the bigger picture". It would be incredibly offensive to deny these things for autistic people and those who care for them and I am not suggesting that.

What I am thinking is that when I have been to the doctors with some symptoms of feeling a bit unwell, all the usual tests are run and a "dunno diagnosis" returns as fatigue. It's one of these things that can be a bit like we recognise something is up but we don't know exactly what the cause is, a bit like Irritable Bowel Syndrome. We can recognise the effect but what is truly the cause?! So all sorts of things can get lumped under IBS - an intolerance to gluten, food allergies, how one responds to anxiety, etc. and we don't exactly get to the central cause.

I think a diagnosis of autism can be a bit like that.
The diagnosis method is very much about observations, self-evaluations (where appropriate) and guess work. There's no blood test or urine sample examined so it is down to a professional opinion of a clinician to diagnose. That's great and its important that the difficulties that autistic people go through are recognised.

However, I am a little worried about this though. We have a medical model of disability full of negative words: disorder, impairment, treatment, weakness, syndrome, diseased, etc. and the aim is to offer a medical cure and find the gene or other reasons for this cognitive deficit. And yet, I am thinking this is rather upsetting for someone, particularly for the higher intellectually functioning person, who is now having the essence of their being and personality associated with being wrong. It is hurtful and it is more so when it is something beyond my control. I didn't acquire Asperger's because I smoked 40 a day and eat a diet of full fat cheese. It was how I was born, a genetic deficit perhaps? This negative language helps to reinforce the feeling of "the other" and constructs this identify around autism that it is something we don't want in society and it needs to be reduced or removed. I find it quite difficult on my self-esteem actually because for no fault of my own I am labelled with something that is a double-edged sword. Whilst it gives me certain protections under the Equality Act 2010 through reasonable adjustments, it also puts me into a box where others can make assumption about the sort of person I am, my needs, my limitations and whether my aspects of my personality are legitimate.
"Oh, she likes computing because she's autistic and benefits from the systemising it provides, not because I just like computers"! Actually, I have studied social sciences at university for five years which I don't think would be considered a particularly autistic-friendly academic subject?
Do we ever say that so and so likes Manchester United because he's a neuro-typical sheep and likes it because half his class like it? No, I doubt it.

So, there we have this medical model but then comes the flip side of those seeking to embrace neurodiversity and that autistic people are different but this is a good thing, through a social model of disability. Alas, I am not sure it is that helpful, for a number of reasons.

This perspective recognises the biological differences in autism, something that the academics have been working on for decades and still not got to any single conclusive point. Loads of theories have comes out: Simon Baron-Cohen's Theory of Mind deficit and the extreme male brain idea, weak central coherence and executive dysfunction and there are many more in recent years, some better than others. Over the years, it has been less about the idea of a deficit or weakness and what is emerging is this idea of a cognitive difference. But again, it is still not fundamentally challenging the idea that autism even exists. I think now most researchers would agree that there is no one theory that can explain everything about autism and each one seems to make an attempt at examining part of it.

Here's my problem with it: it is all very well saying that it is okay to be different but does society understand this? Do they know what autism really is? I suspect that many are swept up in this idea of the Rain Man, the disturbed young child running around Sainsbury's flapping their arms or someone they know who is extremely awkward and socially inept. When we say that being different is good, that is fine if our difference still puts us within the acceptable range of what is normal behaviour. It is okay if one doesn't like going to parties but it is quite other if their autism leads to challenging anti-social behaviour. The social model goes along with the medical view that autism is biological and medical and it is something that can be diagnosed as a real concept. It is noble and whilst I think their goals are brilliant to widen acceptance in society, to foster greater equality and diversity, I feel that they missing a big point.

Does autism even exist? Are we trying to create a greater acceptance for something that biologically isn't there!? Cancers, broken legs and diabetes are all identifiable in a clinical matter. We cannot deny their existence but I have a hard time with autism. I am feeling now that it is a lazy catch-all diagnosis where actually those with such a label have a combination of other difficulties that are not interconnected.
I am troubled in different ways in terms of one's intellectual functioning. On one hand, we have the low functioning autistics who are likely to have a comorbidity that could be the cause of their autism and not autism itself, and we have the highly intellectual functioning autistics who have what we might call a "mild autism" that the traditional cognitive theories of autism struggle to fully account for.

What I am proposing is that autism is a bit like IBS or fatigue. It is a sloppy way of saying by the medical world that we recognise that someone has a number of difficulties or differences and this is caused by autism. We don't really know what it is but it could fit under an umbrella group of symptoms and we shall call it autism.

Perhaps it is for the medical world to unpick each "symptom" to identify their interdependence to one another, or there lack of, and see if what someone has is a mixed bag of things rather than lump it under one diagnosis.
Over to you, clinical psychology and neuroscience!

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